Death anxiety - Singel ventricle heart.

How do you start the post off this topic? I'm not sure.
I'm Milo. I'm 24 and I live in Sweden. I was born with a singel ventrical heart, VSD. While growing up I have never seen myself as the sick-kid. Or viewed myself other than completely healthy. I had my last surgery when I was 7 years old, that was when I removed my pacemaker since my bradycardia stopped bothering me. Ever since, I've just been to the hospital during my yearly check ups.

However, I'm now a graduated Registered Nurse, BSN in Sweden. And this year (2018) my heart has started to been giving me a few issues. This January I was coughing a lot of blood 3 times, although the doctors couldn't find anything. And the cough, well it just randomly just stopped. Then later in March I was experiencing dyspnea, felt like I couldn't breath, so I visited the ER once again and being there my SpO2 dropped one time to below 70% few a minute.. and my habitual SpO2 is around 94%. October this year I wake up in the middle of the night and I feel a pressure over my chest and I experience tachycardia, and arrythmia. It's hard to breath, and it hurts. Being a nurse I knew that I should of gone into the ER again. However, my flight to Bangkok was later the same week. I didn't want to miss that trip.. so I just stayed at home an after 1,5 hours the pain went away and I feel asleep. I went to my doctor 2 days after and had a check up, the found nonthing, obviously, I wasn't in pain after that night. However, they did give me a beta-blocker. Ever since then I haven't felt anything. But, after having these three incidents this year I started to wonder how life has been for others with diagnoses like me, who has underwent The Fontana etc.

During my research I stumbled on the statistics.. Estimated life expectancy 25-40 years . Oh boy, and now I can't stop thinking about it. I think about it all the time. Right now I'm traveling the world with my partner, I'm in thailand for now, next up is Idonesia and the Philipines. But god, the only thing I'm thinking about is that I'm dying and leaving my partner who I love so incredibly much. How do I get over all this? I don't wanna die, lol, who does. Is there any other older with singel ventrical heart that has undergone the fontana? who's past 40? I'm literally on the trip I've been dreaming on for such a long time, but I'm crying myself to sleep, because I'm so scared.

Thank you so much for coming to the Support Network and sharing your story. Please know that we are a warm and welcoming group of survivors and are here to support you! My thought is, at this point, on the trip of a lifetime, you can't change the future. What you can do is try and mentally put this in a "parking lot" to pull back and address when you get home. As long as you continue to feel ok while traveling, work on being in the moment, with your partner and not in the future, which is undetermined. I hope this helps and please know that we are all here for you.

taurabarr,
October 24, 2018 10:01am EST

Hi Milo, I'm so glad you reached out here. Although I cannot relate to your specific diagnosis, I can definitely relate to the thought of an earlier than expected death. It used to keep me up at night and I suffered from panic attacks. I was able to get past this fear and you will too. I'm also a registered nurse and sometimes because we 'know so much' it makes it harder to stop thinking about all of the bad things that can wrong. But as a nurse we also know that numbers are just numbers---they are not a gaurantee of any particular event. And there are patients who beat the numbers all of the time, because human physiology is sincerely that unpredictable!

Secondly, our fears are only messengers and when we begin to see them as such we can learn from them and enjoy life now. I worked with a health coach to uncover why I was so afraid of death and I realized it was because of reasons I had never considered. Once I started uncovering these things I was able to finally face my fear of death and work past it. And you can too.

You are doing the best thing for yourself, which is to reach out for help. We are here to help each other, so keep coming back to this forum. And you may find it very good to reach out to a coach, counselor or fellow nurse friend to start talking about your fear of death.

I sincerely hope this helps, and I'm sending you prayers for peace :)

JeffB,
October 24, 2018 11:06am EST

Milo,

Ok, First off, Katie and Taurabarr are spot on. I use those same techniques myself as a heart attack survivor and chronic anxiety sufferer.

I’ve also been to some really dark places where all I could do was to sequester myself and cry myself to sleep. I still struggle with despair. But I decided it’s sort of like the saying that I heard in some movie when the topic was if the character was worried about the potentially life threatening next scene. The response was something like this “I don’t worry. Worrying means you suffer twice.” That’s my goal. And in my case, I purposely put myself in situations where if something happens to me, I will be dead. I do mountain climbing, long distance running and 25 to 50 pound backpack hiking, complete with bear canisters, anywhere between 20 & 90 miles in wilderness settings. No cell reception. No 911. The purpose though is not to risk my life. My goal is to force my brain to reprogram. Away from the anxiety and fear of death and onto where it should be instead. Enjoying life.

I won’t lie, I still struggle, and it sucks big time when I fall prey to the anxiety mental pathways, but my husband told me something recently. “I miss you when you are gone hiking, but it’s worth it, you always come back more centered, positive and happier.”

I didn’t get here overnight either. I saw a therapist. Well two really. Started meditating. Started hanging out on the AHA Support Network and made a lot of friends with varied conditions over the past couple years. Refined my writing habit. Started a private audio log (god help me if those files ever got exposed). I read a bunch of death books, mainly to face my fear and to seek out frameworks and mentors who actually faced the fact that they were dying or had worked with the dying. Here are a few book suggestions:

When Breath Becomes Air – this one is great, the author dies from cancer but he talks about his mental and emotional journey – one thing was awesome though, he had a conversation with a colleague about how he was no longer on the career path he had worked on for a decade, the most important thing he could do now would be to “find his values” – basically, live the days you have with as much enjoyment as you can express

A Year to Live – this guy is a meditation guru (along with his son), the book is a framework which anyone should read in my opinion, super good

Mortality, this is one of my favorite authors and he speaks from the heart, brutal and finite

While I don’t share your physical condition, I know very well what you are feeling emotionally. Like you, I worry about my spouse. I am not nearly done yet preparing for retirement. Leaving Eddie, my husband, behind ill prepared for the future is a constant worry of mine. But we can only do what we can. There’s that, yes, but I will tell you something, it’s not about the money. It’s about the love and happiness that two people share with each other that counts most. Make the most of every day. Use Katie’s “parking lot” technique to put boundaries around the fear so that it does not steal precious enjoyment from you.

You should be happy, regardless of what statistics say. When I was recovering in the hospital, I mentioned to Eddie that I now had a 25% chance of having another heart attack. You know what he told me though? “That means you have a 75% chance of not having a second heart attack.” That’s the kind of thinking you need to gradually and constantly tell your brain. Move away from the well worn neural pathways of anxiety, build new ones, and a gratitude journal can help with this, that retrain your brain to stay in a happier place.

Good luck with your condition and please don’t be a stranger. This is truly a community where people support one another. Let us know how things are going.

Now go and have some fun!

Jeff

KimberlyG,
October 24, 2018 1:13pm EST

Hello. How are you today?

Fyi: A couple of years ago , I received a new heart valve plus a pace maker. I was born with an abnormal heart valve and developed symptoms at age 42. I notified my doctor, a test was ordered then I received a mechanical valve. Four days later I developed heart blockage . The doctor informed my family that I would need a pace maker to help my heart function. A year later, my third surgery took place : pace maker revision. My fourth surgery took place on December 21st, 2015; I received new batteries in my pace maker.

How I cope with my health obstacles on a daily basis? I rely on my faith in God and support from my medical team, beautiful family & friends.

Being scared is a normal and healthy reaction to your immediate situation. Your body is reacting to your situation and strengthening you as a result of your fear. So what?

So, now take advantage of your dream trip! Enjoy every minute of it and appreciate the fact that your heart has given you this opportunity. Good for you! I've been there & done that relative to taking a trip while I knew that I was "in line" for some major cardiac work. I visited Yellowstone Park, then went home for some major surgery. Medical science today has made such progress that you should not waste any time or thought about the ticker! Enjoy this moment on a favbulous trip. All the best!

Ambassador B

GoREDGAIL,
October 24, 2018 2:55pm EST

Hi There!!

It makes perfect sense you would be worried with all you went through. I am proud you are a nurse now and feel good about your awareness of the situation. Being a life coach, this is what I recommend. Pick a 30 minute or less time when you get back to the room and worry and think about your nervousness then. Everytime it pops up in your head redirect to your appointed worry appointment. If you have to cry get it all out. I would get a small pad of paper and write down your feelings. This all can wait until you get home but I suspect you need it now. I would also write on the notepad what you are emotional feeling when it pops up then put the pad away and address it at your appointed time.

In this journal I would notate/write your physical systems as you notice them. I would use this for when you visit the doctor and then you won’t have to worry about that because you have it on paper.To alleviate your worst fear of dying I would locate the best cardiologist you can find and get an echo and all tests you and the doctor thinks you need to be sure you are fine. Once you get this and have the doctor spell it out what needs to be done to ensure your fine, then keep writing down your feelings ...emotional and physical in the notebook and focus on them at your appointed time. Hopefully you have adopted a heart healthy lifestyle and moderation is the key. Please keep us informed on how you are doing. We care about you❤️❤️❤️❤️❤️❤️❤️

Go Red Gail National Spokesperson

Life Coach

AmbassadorDN,
October 24, 2018 6:22pm EST

Hi, Milo,

My heart goes out to you! I’m jumping in late to the conversation since I’ve been at work all day, and so there is not much more I can add other than to echo what others have written to you.

My CHD is much different than yours—I was born with a defective heart valve (mitral)—and have had four heart surgeries to address the defect between 2006-2017. I’m 43 with a mechanical valve, and I too have struggled with my mortality as well—especially when both my cardiologist and recently my electrophysiologist told me that I will eventually need a heart transplant.

I am also involved with a couple CHD groups on Facebook as well, and I know a few folks who have had the Fontan and are over 40. You may also want to check out those groups to connect with other single-ventricle survivors.

Meanwhile, Milo, I know all too well the fear of dying from my heart disease. Even after my most recent surgery last November, and having a complication that honestly could have killed me, I suffered from horrible post-op depression and anxiety. It didn’t happen right away—the depression/anxiety was a latent development, and I felt guilty for feeling the way I did. I absolutely hated it when people would tell me to cheer up, look on the bright side, that I was being ungrateful for another chance at life. I know! I was trying so hard! I finally, at the behest of my cardiologist, went to a neurologist who diagnosed me with depression and prescribed a low dose of anti-depressants. I also began seeing a therapist who helped me untangle all the mix of emotions—especially the fear.

Perhaps speaking with someone who can help you sort out your feelings will be of benefit. We are all here for you on the Support Network, and are here to listen and advise as needed.

Not sure I can add much more than what everyone here has said. Please try not to let this overwhelm you and enjoy your trip. Who knows what life has in store for any of us? All we can do is live the life we choose the best that we can. Continue to seek treatment as needed and live well! People live remarkably long lives these days with a variety of diseases because of the technology available to us. And that technology continues to get better at a rapid pace. My cardiologist recently told me that grafting techniques are so much better than they were just a few years ago. So take comfort in the fact that better treatments are just around the corner.

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